ethnic groups: a scoping review of the literature.

LITERATURE REVIEW

Barriers to Health Care Among People With Disabilities Who are Members of Underserved Racial/Ethnic Groups A Scoping Review of the Literature Jana J. Peterson-Besse, MPH, PhD,* Emily S. Walsh, MPH,w Willi Horner-Johnson, PhD,z Tawara D. Goode, MA,y and Barbara Wheeler, PhD8

Background: Understanding barriers to health care access experienced by people with disabilities who are members of underserved racial/ethnic groups is key to developing interventions to improve access. Objective: To conduct a scoping review of the literature to examine the published literature on barriers to health care access for people with disabilities who are members of underserved racial/ethnic groups. Data Sources: Articles cited in MEDLINE, PsycINFO, and CINAHL between the year 2000 and June 19, 2013. In addition, table of contents of 4 journals and the reference lists of the included article were reviewed for potentially relevant titles. Study Selection and Extraction: Studies examining barriers to health care access among adults aged 18–64 with disabilities who are members of an underserved racial/ethnic group were included. From the *Department of Public Health, Pacific University, Forest Grove OR; wOregon Evidence-based Practice Center, Kaiser Permanente, Portland, OR; zInstitute on Development and Disability, Oregon Health and Science University, Portland, OR; yDepartment of Pediatrics, Center for Child and Human Development, Georgetown University Medical Center, Washington, DC; and 8Childrens Hospital Los Angeles, University of Southern California, Los Angeles, CA. Supported by the Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD) under Cooperative Agreement U01DD000231 to the Association of University Centers on Disabilities (AUCD). The content of this material does not necessarily reflect the views and policies of CDC, NCBDDD, or AUCD. The results of the review for years 2000–2009 were presented at the Project Intersect National Conference: Health Disparities Research at the Intersection of Race, Ethnicity, and Disability. Washington, DC, April 25, 2013; the American Public Health Association Annual Meeting, Washington, DC, October 31–November 3, 2011; and the Association of University Centers on Disabilities Annual Meeting & Conference. Crystal City, VA, October 30–November 3, 2010. The authors declare no conflict of interest. Reprints: Jana J. Peterson-Besse, MPH, PhD, Department of Public Health, Pacific University, 2043 College Way, Forest Grove, OR 97116. E-mail: [email protected]. Supplemental Digital Content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Website, www.lww-medical care.com. Copyright r 2014 by Lippincott Williams & Wilkins ISSN: 0025-7079/14/5210-0S63

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Volume 52, Number 10 Suppl 3, October 2014

Two reviewers screened abstracts, screened each full-text article and extracted data, and discrepancies were resolved by consensus. Results: Ten studies were identified that met all inclusion criteria. The most frequently described barriers were uninsurance, language, low education level, and no usual source of care. Barriers to health care access related to race or ethnicity (6 studies) and disability (1 study) were observed less often than those related to socioeconomic status or health care systems factors (9 studies). Conclusions: Our findings reflect a critical gap in the literature. Greater attention is needed to subgroup differences including race, ethnicity, and culture within the population of people with disabilities. Key Words: scoping review, disparities, disability, health care access, race, ethnicity (Med Care 2014;52: S51–S63)

A

ppropriate and timely health care is essential to optimal health outcomes.1 Reduced access to health care disproportionately affects members of marginalized groups, including underserved racial/ethnic groups2 and people with disabilities.3 Research about each of these 2 distinct populations documents common as well as unique barriers to accessing health care. However, it is not clear whether having dual membership in both groups increases health care access barriers and, ultimately, health disparities in this unique population. People of all racial/ethnic groups experience disability. According to Behavioral Risk Factor Surveillance System data from 2004 to 2006, an estimated 19.9% of the total adult US population had a disability. By racial/ethnic category, 11.6% of Asian, 16.6% of Hawaiian/Pacific Islander, 16.9% of Hispanic, 20.3% of non-Hispanic white, 21.2% of nonHispanic black, and 29.9% of Native American respondents experience disability.4 Furthermore, members of underserved racial/ethnic groups disproportionately experience risk factors for disability that may be exacerbated by poor health care access.5–7 Understanding how health care access may change for these individuals once they have a disability is particularly important, as such knowledge can inform efforts to prevent further deterioration of health and function. www.lww-medicalcare.com |

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The purpose of this scoping review is to identify published literature on barriers to health care access among people with disabilities who are also members of underserved racial/ethnic groups. Healthy People 2020 describes that access to health care requires 3 steps3,8: gaining entry to the health care system; accessing a location where needed services are provided; and finding a provider with whom the patient can communicate and trust. Completing these steps requires cultural and linguistically competent care that aligns with the patients’ cultural contexts. Barriers in all of these categories affect people with disabilities and members of underserved racial/ethnic groups. The following is a brief discussion of literature about barriers experienced by these 2 groups separately, which informs the expected outcomes of a review of barriers at the intersection.

UNDERSERVED RACIAL/ETHNIC GROUPS People in underserved racial/ethnic groups are less likely to have a usual source of care.9 They also experience numerous logistical barriers, including inconvenient office hours conflicting with work schedules; lack of appointment availability and lengthy waiting lists; lack of transportation10–12; unaffordable health care costs; and inadequate health insurance coverage.2,11,13,14 Access is further restricted for individuals who do not have permanent legal resident status.15,16 Even after gaining access, members of underserved racial/ethnic groups continue to experience barriers, including language barriers and difficulty obtaining quality interpreter services,2,11,12,17 lack of health care provider cultural competence,10,18 and conscious and unconscious biases, stereotyping, and discrimination.2,10,11,19 In addition, members of underserved racial/ethnic groups may have difficulty trusting physicians and health care systems due to a history of unethical treatment and institutionalized racism.2,20,21 Access is limited by gaps between the institutional culture of the health care setting and the culture of the patients, poor physician-patient communication, and lack of cultural brokers, system navigators, and cultural acceptability of the care offered.2,12,22,23 In addition, patient characteristics may impact health care access. Such factors include: culturally defined beliefs about health, illness, and wellness; world view about western medicine; knowledge necessary to navigate health care systems; literacy and health literacy; and socioeconomic status.17,24,25

PEOPLE WITH DISABILITIES A smaller, more recent literature has explored health care barriers experienced by people with disabilities. Many of these parallel the barriers experienced by underserved racial/ethnic groups, including: limited appointment availability and inconvenient office hours26; lack of accessible and timely transportation26,27; substantial cost and insurance barriers14,26–28; poor physician-patient communication and difficulty navigating the health care system27,29; discrimination, negative attitudes, and lack of respect.27,30–32 Like members of underserved racial/ethnic groups who encounter

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barriers locating providers who offer culturally appropriate and linguistically accessible care, people with disabilities often have difficulty finding providers with relevant specialized knowledge for treating disability-related conditions or other health problems in the context of disability.26,27,30 In addition, individuals who are deaf or hard of hearing encounter linguistic barriers and lack of interpreters.31,32 Unique to people with disabilities are architectural barriers associated with physical access to and navigation in health care facilities.24,25,28 Moreover, they may receive insufficient time for addressing complex medical needs during health care visits.27 Understanding barriers to health care access experienced by people with disabilities in underserved racial/ethnic groups is key to developing successful interventions to improve health care access and outcomes for this marginalized group. Although barriers to health care have been studied separately for people with disabilities and for underserved racial/ethnic groups, there has been much less attention to those who are members of both populations. The purpose of this scoping review is to identify barriers that have been described for this group, and to note gaps where potential barriers have not been addressed in the literature.

METHODS We conducted a scoping review based upon published guidelines.33 The key question guiding the review was: what peer-reviewed, English-language studies presenting original data examine barriers to health care access and utilization among people with disabilities from underserved racial/ethnic groups? The review included articles published between 2000 and June 19, 2013. Conceptual and operational definitions were set for concepts introduced in the key question, including: health care access/utilization, barriers to/facilitators of health care access/utilization, underserved racial/ethnic group, and disability (Table 1). We used purposely broad definitions for inclusion (eg, health care access) because of the exploratory nature of this review. The International Classification of Functioning, Disability, and Health (ICF)34 model of disability, which includes impairments, activity limitations, and participation restrictions, was the conceptual definition for disability. The search strategy used subject headings consistent with these limitations, rather than terms for specific disabling conditions. Details of this search strategy are reported elsewhere.35 Populations with psychiatric/mental health disabilities (without additional cooccurring disabilities) were not included in our disability definition. We acknowledge that literature about these individuals is important, but we believe this population is sufficiently unique and complex that it should be given full consideration in a separate study. We developed and executed search strategies for MEDLINE, PsycINFO, and CINAHL. The disability search strategy, described above, was combined with a search for underserved racial/ethnic groups, based upon a published search strategy on health disparities.36 Because we were not limiting the search to particular types of health care services r

2014 Lippincott Williams & Wilkins

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Disability Barriers Scoping Review

TABLE 1. Conceptual and Operational Definitions for Key Concepts of the Scoping Review

Terms

Conceptual Definition

Healthcare access

Availability or openness of any form of health care

Barriers to/facilitators of healthcare access

Any factor (other than racial, ethnic, or disability status alone) that either impedes or enables health care access or utilization Individuals from any racial or ethnic group that was traditionally or historically underserved or marginalized

Underserved racial or ethnic group

Disability

Based on the conceptual domains of the International Classification of Functioning, Disability and Health.34 The International Classification of Functioning, Disability, and Health defines disability as an umbrella term for impairments, activity limitations or participation restrictions. Further, the ICF and contemporary approaches to disability emphasize that environmental factors interact with all of these constructs

or barriers, the search strategy was not combined with an additional search for health care or barrier subject headings in MEDLINE or CINAHL. Rather, all abstracts returned by the combined racial/ethnic group and disability searches were screened. As PsycINFO is not a health-specific database, the search strategy was further combined with subject headings to specify health care access [eg, health care services, health care utilization, uninsured (health insurance)]. See Appendix 1 (Supplemental Digital Content 1, http://links.lww.com/MLR/A772) for the complete search history. We retrieved additional titles for review via table of contents reviews for years 2000–2013 of Disability & Health Journal, Journal of Disability Policy Studies, Ethnicity and Disease, and Journal of Health Care for the Poor and Underserved. These journals were selected because the 4–2 with a disability focus and 2 with a focus on underserved racial/ethnic groups—publish on health disparity issues. Finally, we reviewed reference lists of included articles for potentially relevant titles. Basic inclusion criteria were: English-language peerreviewed journal publications from years 2000–2013; about adults aged 18–64 in an underserved racial/ethnic group who also have a disability and reside in the United States or US territories; and examining barriers to health care access. The working-age population was specified because barriers, including insurance barriers, can vary substantially across age groups. Studies that defined disability as an outcome, rather than the population of interest, were excluded. Included articles could describe observational or intervention research and were not limited by study design. r


Select Subject Heading Terms for Search of Electronic Database

Operational Definition Availability or openness of, eg, health care, specialty health care, dentistry, primary health care, emergency services, and pharmaceutical services Eg, health insurance, socioeconomic status, education, language, health care system characteristics Eg, African American, Asian American, American Indian, Alaskan Native, Hispanic or Latino, Pacific Islander, immigrant, or limited English proficiency group Disability or functional limitation falling into at least one of the following functional categories: physical, sensory, cognitive, social, or activity limitation

healthcare services, healthcare utilization uninsured (health insurance) minority groups, “racial and ethnic groups,” diversity, blacks, Hispanics disabled persons, activities of daily living, dependent ambulation

At the abstract level of review, 2 independent reviewers were each assigned 45% of the total number of articles with 10% overlap to monitor interrater reliability. The full texts of all articles included at the abstract level were reviewed independently for inclusion by 2 reviewers, with all discrepant decisions about inclusion resolved by consensus. For quality-control purposes, author reviewed articles included by the 2 independent reviewers. Two reviewers independently extracted study descriptive data and potential barriers to (or facilitators of) health care access, resolving extraction discrepancies by consensus. Potential barriers/facilitators could include characteristics of the person (eg, age, sex, country of birth) or external factors (eg, insurance type, usual source of care, transportation). Although a number of these factors are nonmutable, they are referred to as barriers, facilitators, or nonsignificant factors for simplicity. Race, ethnicity, or presence of a disability were not considered as barriers in and of themselves; rather, we wanted to know what barriers are encountered by people with disabilities who are members of underserved racial/ethnic groups. Extracted data are summarized in 2 tables (Tables 2 and 3). Descriptions of the included studies, the purposes of these studies, and barrier and facilitator findings are presented. To contextualize the findings, we examined whether these factors were related to race/ethnicity, disability, or other phenomena (eg, socioeconomics or systems). Certain barriers could be attributed to multiple factors (eg, physicianpatient communication, unreliable transportation). We used the contexts provided by the author of an included study to assign each barrier to its respective category. www.lww-medicalcare.com |

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RESULTS Our search methods identified 3935 unique references for review (Fig. 1). The majority (68%) of abstracts were excluded for not being related to health care access. Following abstract review, we retrieved 171 articles for full-text review. We identified 10 articles investigating barriers to health care access for people with disabilities who are also members of underserved racial/ethnic groups.37–42,44–47 The articles are described in Table 2.


Description of Included Studies Purpose of Included Studies Only one of the studies was framed by its authors as: (1) an examination of health care access barriers; (2) for individuals with disability; and (3) from an underserved racial/ethnic group.40 The study examined barriers to receipt of service for Puerto Rican adults with intellectual disabilities living in Massachusetts, as reported by their mothers. Barriers were studied for services with highest proportion of

Additional records identified through other methods n = 206

Identification

Records identified through electronic database searching n = 4191

Screening

Abstracts after duplicates removed n = 3935

Abstracts excluded n = 3764

Included

Eligibility

Full-text articles excluded n = 161

Full-text articles assessed for eligibility n = 171

Exclusion reasons: study population lives outside the U.S., non peerreviewed; no original data; not healthcare access-related; no healthcare barriers; population outside target age range; not examining underserved racial/ ethnic groups; not examining disability populations; not examining intersection

Articles included n = 10

FIGURE 1. Selection process for the articles included in the final scoping review of literature on barriers to health care access for people with disabilities who are members of underserved racial and ethnic groups.


r


r

Study Foci

2014 Lippincott Williams & Wilkins *

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*

www.lww-medicalcare.com |

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(Continued )

*

*

*

Barriers Disability Race


Cognitive impairment: intellectual disability (ID)

Mobility impairment

Ho et al39

Study Purpose, Overview, Methods

Maganã et al40

Vision impairment: visually significant cataract

Broman et al38

Primary care

Health Care Type

Study overview: Evaluation of a quality improvement initiative implementing a capitation managed care model, in comparison with traditional primary care. Purpose: To evaluate a managed care model developed for use by community-based providers to improve health care outcomes for low-income Latinos with disabilities and chronic illnesses/To determine whether capitation serves as a catalyst to transform typical primary care delivery processes to meet the needs of Latino patient with complex health and psychosocial conditions. (Purpose does not directly address barriers). Methods for examination of barriers: Qualitative interviews conducted by bilingual researchers to evaluate new model (with barriers to traditional primary care described as contrast to improvements under new model); N = 18; local sample (Brightwood, MA); no comparison made to barriers experienced by other ethnicity or nondisabled groups. Hispanic (of Mexican Ophthalmology (cataract surgery) Study overview: Epidemiological study of visually descent) significant cataract and cataract surgery, and factors affecting surgery use. Relevant purpose: To determine demographic and socioeconomic factors that influence use of cataract surgery in a Hispanic population living in the United States. Methods for examination of barriers: Cross-sectional; survey of individuals with cataracts; N = 497; Local sample (2 towns in Southern AZ); no comparison made to barriers experienced by other ethnic or nondisabled groups. African American General access: impact of living Study overview: Exploratory qualitative study examining the environment on health and impact of living environment on health and health care health care access access for people with physical disabilities who live in homeless shelters, nursing homes, or inaccessible private residences. Purpose: To understand the impact of living environment on health and health care access of low-income adults with physical disabilities Methods for examination of barriers: Qualitative—focus groups; N = 28 (93% African American); local sample of homeless individuals with disabilities (Washington, DC); no comparison made to barriers experienced by other ethnicity or nondisabled groups. Latino (of Puerto OT and PT (study also examines Study overview: Compares service utilization and unmet Rican descent) non–health care services outside needs of Puerto Rican and non-Latino white adults with the scope of the current review, eg, ID (examines disparities). Examines barriers to services social and recreational activities, among Puerto Rican adults only. speech therapy, respite)

Race or Ethnicityw

Disability: broadly defined as Latino (of mostly people with disabilities or Puerto Rican chronic illness, with Medicaid descent) eligibility under SSI-disability or long-term un-employment

Disability

Bachman et al37

References

TABLE 2. Descriptive Characteristics of the Included Studies

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S56 | www.lww-medicalcare.com Latino (majority Ophthalmology (cataract Mexican American) surgery)

Relevant purpose: To evaluate whether whites and African Americans with moderately to severely disabling migraines differed in regards to physicianguided diagnosis and treatment for migraine, and in mistrust in the health care system and perceived communication with their physician (as barriers to treatment). Methods for examination of barriers: Cross-sectional; survey data of individuals with headache disability; N = 131 (77 African American, 54 white); local sample (3 primary care practices in a large midwestern metropolitan area); comparison made between races; no comparison with nondisabled groups. Study overview: Epidemiological study of visually significant cataract and cataract surgery, and factors affecting unmet need for surgery. Purpose: To report predisposing, enabling, need, and health behavior characteristics associated with unmet need for cataract surgery in a US Latino population Methods for examination of barriers: Cross-sectional; inhome interview and clinical data; N = 344; local sample (6 census tracts in Los Angeles County, CA); no comparison made to barriers experienced by other ethnicity or nondisabled groups.

*

*

*

*

*

*

Barriers Disability Race

Vision impairment: visually significant cataract

Study Purpose, Overview, Methods Relevant research question: What are the barriers to receiving needed services for Puerto Rican adults with ID as reported by their mothers? Methods for examination of barriers: Cross-sectional; survey of proxy respondents (mothers); N = 66; state sample (several agencies in MA); no comparison made to barriers experienced by other ethnicity or nondisabled groups. Study overview: Study of disparities in access to rehabilitation services for individuals with TBI by race, ethnicity, and language. Purpose: To determine whether race/ethnicity and proficiency with the English language influence access to rehabilitation services, and ultimately outcome after traumatic brain injury Methods for examination of barriers: Retrospective correlational design; telephone interview of individuals with TBI, 6 mo postinjury; N = 476 (42 African American, 109 Latino, 325 white); hospital-based sample (patients receiving care in a level 1 trauma center over 7 y); Comparison made between races, ethnicities, languages; no comparison with nondisabled groups. Study overview: Study of disparities by race in access to migraine care for individuals with headache disability.

Study Foci

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Richter et alz44

Headache care (use of health care for headaches and headache medications prescribed)

African American, white

Headache disability: at least moderate headache disability (per the Migraine Disability Assessment Scale43)

Nicholson et al42

Health Care Type

Hispanic, African Rehabilitation services American, nonHispanic whites Additional analysis of Hispanic group by language

Race or Ethnicity

Cognitive impairment: traumatic brain injury

Disability

Marquez de la Plata et al41

References

w

TABLE 2. Descriptive Characteristics of the Included Studies (continued)

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r


r

Cognitive impairment: traumatic Hispanic, African brain injury American, nonHispanic whites


Vision impairment: vision limitation associated with undetected eye disease Latino (majority Ophthalmology (undetected Mexican American) eye disease)

Study overview: Study of disparities in access to rehabilitation services for individuals with TBI by race and ethnicity. Purpose: To determine whether access to TBI rehabilitation after trauma center discharge is influenced by race, ethnicity. (purpose does not directly address barriers). Methods for examination of barriers: Cross-sectional; clinical data from National Trauma Data Bank; N = 58,792 (8325 African American, 5406 Latino, and 45,061 whites); comparison made among races, ethnicities; no comparison with nondisabled groups. Study overview: Qualitative investigation of attitudes regarding epilepsy surgery and barriers to surgery among adults, minority adults, adolescents, and parents of adolescents. Purpose: To document potential barriers limiting patient access to surgical treatment of epilepsy, highlighting attitudes of minorities Methods for examination of barriers: Qualitative study— focus groups; N = 24 (6 in African Americans group, 18 categorized by “adult” (75% white), “adolescent” (75% white), and “parent” (race not reported) focus groups; sample from UCLA Seizure Disorder Center, Los Angeles; comparison made between races; no comparison with nondisabled groups. Study overview: Epidemiological study of eye disease among Latinos and factors related to undetected eye disease in this group. Relevant purpose: To evaluate factors associated with undetected eye disease among Latinos Methods for examination of barriers: Cross-sectional; survey and clinical data; N = 3349; local sample (six census tracts in Los Angeles County, CA); no comparison made to barriers experienced by other ethnicity or nondisabled groups. *

*

*

*

*

w Throughout the article narrative, the terms African American, Hispanic/Latino, and non-Hispanic white are used to describe race and ethnicity across articles. In this table, race and ethnicity is described using the terminology of each included article. z Two studies drew samples from the same (Los Angeles Latino Eye Study) dataset but used distinct samples.

Varma et alz47

Specialty care: epilepsy surgery

Rehabilitation services

Swarztrauber Epilepsy, associated with decline African American, in social, occupational, white et al46 physical, mental, or emotional function

Shafi et al45

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study participants reporting unmet need: occupational therapy (39.4% unmet need), physical therapy (25.8% unmet need), and several non–health care services (not discussed here, as they are beyond the scope of this review). Barriers to care included not knowing how to access services, being wait-listed for services (occupational therapy only), having access problems (ie, service too expensive, inconvenient, not available locally, or no transportation), service being denied or cut, and language barriers or lack of cultural understanding (physical therapy only). Although the other 9 studies also provided data on barriers to health care access at the intersection of race and disability, their purposes varied (Table 2). Seven of the studies discussed samples with disabling conditions but did not frame their focus on disability38,41,42,44–47; one of these studies45 also did not have examination of barriers to health care as a primary purpose. One study focused on a sample of people with disabilities defined in terms of low socioeconomic status rather than belonging to underserved racial/ ethnic groups.39 One study considered the intersection of disability with Latino ethnicity, but its purpose was to evaluate a managed care model rather than specifically study barriers to health care access.37

Descriptive Characteristics The 10 articles included a limited array of disability types, racial/ethnic groups, and health care settings. No article reported a mixed disability sample consisting of people with varied disability types, and no article made comparisons between barriers to health care access for people with and without disabilities. The only underserved racial/ethnic groups in the studies were African Americans and Latinos. Multiple types of health care were represented across studies, including ophthalmology care, rehabilitation services, physical and occupational therapies, epilepsy surgery, headache care, primary care, and general access to health care.

Barriers to Health Care Access The barriers and facilitators to health care access observed in individual studies are presented in Table 3, along with factors that were examined but not significant barriers to accessing care. The most frequently described barriers were: uninsurance (5 studies)38,41,44,45,47; insurance type (4 studies)39,41,45,47; language (3 studies—2 that specified Spanish language as the barrier37,38 and 1 that specified “language or cultural problems”)40; low education level (3 studies)38,44,47; and no usual source of care (3 studies).38,44,47 No single factor was consistently observed to facilitate access across multiple studies.

Factors Related to Race/Ethnicity Eight of the 10 studies examined factors related to race/ethnicity, and 6 of them observed at least 1 such factor to be a significant barrier to health care access. In addition to language (3 studies),37,38,40 barriers were: patient mistrust of the medical establishment by African Americans (2 studies)42,46; low acculturation (1 study)47; and problems with physician-patient communication (1 study).42 One study observed that lack of both age and racial concordance with


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others in a medical support group caused discomfort and decreased the relevance of the activity.46

Disability Factors Only one of the 10 studies examined disability-specific factors in relationship to access to health care. The study found inaccessible and unreliable transportation to be a barrier to African Americans with mobility impairments.39

Other Barriers Many socioeconomic and systems barriers were observed within studies that could be due to membership in racial/ethnic groups, disability, or a combination of both. Nine of the 10 studies examined at least one of these factors.37–41,44–47 In all 9 cases, at least one of these factors was found to be a barrier to health care access. Examples of these factors include uninsurance or insurance type (most frequently found, in 5 studies38,41,44,45,47 and 4 studies,39,41,45,47 respectively), low income and education, no usual source of care, lack of clinician or staff knowledge of specialty treatment, poor service coordination, wait time, services being denied or cut, and services considered to be unacceptable. Figure 2 lists all barriers and facilitators observed across the 10 studies, and whether they were related to race or ethnicity, disability, or other phenomena.

DISCUSSION Research examining barriers to health care among people with disabilities who are members of underserved racial/ethnic groups is at an early stage of development. Only 10 published studies that met our inclusion criteria provided data on barriers to health care access among individuals who are members of both groups. Further, the purpose of only one of these studies was to explicitly examine barriers to health care access for people at the intersection, and it focused specifically on adults of Puerto Rican descent with intellectual disabilities. The scope of the 10 included studies is limited. The study populations included only African American and Latino underserved racial/ethnic groups, and the only non-English language group was Spanish speakers. Underserved racial/ethnic groups such as Asian and Pacific Islanders, American Indians, Alaska Natives, or other ethnic groups were not included. Disability types were more varied, but not necessarily representative of the disability population. Some conditions (eg, headache) were included in this scoping review because they were described as limiting function, even though they are often not included in disability definitions. Other included disabilities (eg, vision impairment due to cataracts) would not have been present if the study sample had been able to obtain the needed health care. In addition, a narrow set of health care types was addressed. Access to primary care was underrepresented, with only 1 study focused on access to primary care and 1 focused on general access to care. With such paucity of evidence, it would be difficult to draw generalizable conclusions from the body of literature about barriers and their impact on individuals with disabilities who are also members of underserved racial/ethnic groups. r


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TABLE 3. Barriers, Facilitators, and Nonsignificant Factors Related to Access to Health Care for Adults With Disabilities Across Included Studies References

Disability

Race or Ethnicity*

Barrier Factors

Facilitating Factors

Nonsignificant Factors

Bachman et al37

SSI disability

Latino

Spanish language spoken Previous negative experiences accessing care

Broman et al38

Vision

Hispanic

Low education Uninsurance Spanish language spoken No usual source of care

Ho et al39

Mobility

Maganã et al40

I/DD

Marquez de la Plata et al41

Cognitive

African American Inaccessible or inconvenient transportation Clinic system factors (short appointments, long wait time) Insurance type (Medicaid a barrier to receiving needed dental care) Poor service coordination Poor sanitary conditions preventing home health care Lack of security in shelters leading to stolen medications Latino Patient knowledge of health system Finding service unacceptable according to standards or preferences (PT only) Clinic system factors (“on waiting list,” OT only) “Access problems” = too expensive, inconvenient, not available in area, or no transportation Service denied or cut (PT only) “Language or cultural problems” Hispanic, African Insurance type (private insurance—African Insurance type (government Language spoken (no American, Americans with private insurance insurance, facilitating for difference between white significantly less access than whites with African Americans; private Spanish speakers and private coverage) insurance, facilitating for English speakers) Hispanics—both compared Uninsurance (lower percentage access with white referent) compared with insured groups; no

Nicholson et al42

Headache disability

Richter et al844

Vision

Shafi et al45

Cognitive

Swarztrauber Epilepsy et al46

Patient knowledge of system Clinic system factors (wait time) Patient knowledge of health and treatment Care coordination Recently visited a health care Age professional Sex Low-income or finances; Distance to/geographic availability of service Acculturation

statistical difference among racial/ethnic groups) African American, Patient mistrust of the medical communityw white Physician-patient communication (PPC) barrier for both seeing doctor for headache care and for prescription of headache medicationw Latino Marital status (unmarried) Spanish language spoken by patient Low education Uninsurance Low income No usual source of care Not usually seen at a clinic Self-reported barriers to eye carez Time since last examination >5 y Hispanic, African Uninsurance (uninsured African Americans American, and Hispanics less likely to have access white than uninsured whites; uninsurance also an independent predictor of lack of access for total sample) Insurance type (African Americans and Hispanics with government insurance less likely to have access than whites with government insurance) African American, Patient knowledge about epilepsy (sample white finding—not race-specific) y

Age Sex Unemployment Country of birth (non-US) Acculturation

(Continued ) r



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TABLE 3. Barriers, Facilitators, and Nonsignificant Factors Related to Access to Health Care for Adults With Disabilities Across Included Studies (continued) References

Varma et al847

Disability

Vision

Race or Ethnicity*

Latino

Barrier Factors

Facilitating Factors

Clinician/staff knowledge, training, skills related to epilepsy treatments (sample finding—not race-specific) y Clinic system barriers (sample finding—not race-specific); y Patient mistrust of the medical community (described for African Americans only) y Discomfort participating in support groups decreases treatment information access (described for African Americans only) y Older age Insurance type (private or nonpublic insurance) Sex (male) Low education Low income Uninsurance Insurance type (public insurance) No usual source of care Low acculturation

Nonsignificant Factors

Trouble getting eye care

*Throughout the article narrative, the terms African American, Hispanic/Latino, and non-Hispanic white are used to describe race and ethnicity across articles. In this table, race and ethnicity is described using the terminology of each included article (Table 2 for more detail about samples). w African Americans were more likely than whites to report mistrust and poor PPC; among the entire sample (African American and white, mistrust and poor PPC correlated with poorer access). z Self-reported barriers to eye care in Richter44: “largely logistic and economic barriers”p.2332—cost (n = 15), care not available when needed (n = 9), lack of transportation (n = 6), concern of lost wages (n = 4), long wait time in clinic (n = 3), and inconvenient clinic hours (n = 3). No Hispanic staff at clinic, staff not speaking Spanish, and disrespectful staff “received little to no response.”p.2332 y All qualitative findings; no comparisons made between racial groups. 8 Two studies drew samples from the same (Los Angeles Latino Eye Study) dataset but used distinct samples.

Quality of included studies also varied. We determined that formal critique is only appropriate in light of the specific purpose for which an article was written. Because included studies generally varied from the purpose of our review (Table 2), a formal quality critique was not undertaken. Given their different purposes, included studies varied across sample size, study design, and measurement techniques. As a general observation, we believe that many of the included studies were of low to moderate quality, even relative to their purposes. For example, several of the studies were qualitative or had very small samples, reflecting a more exploratory phase of research. Although other studies had large overall sample sizes, analyses regarding specific racial/ethnic groups were often conducted with small subsamples. We urge caution in interpreting the results of any given study included in this review. The barriers examined in the identified studies are a subset of those we anticipated based on the separate bodies of literature on barriers experienced by underserved racial/ ethnic groups and by people with disabilities. The majority of the barriers were (1) factors unique to racial/ethnic group membership, such as language barriers and lack of cultural understanding on the part of health care providers; or (2) socioeconomic, health care system, and individual cognitive barriers, which could be related to race/ethnicity, disability, or both. The only barrier specific to the disability experience observed in this review was lack of physically accessible transportation. Other barriers related to disability, such as


lack of physically accessible facilities or lack of clinician knowledge related to disability, were expected but not observed. More research is needed to determine whether people who both have a disability and are members of an underserved racial/ethnic group experience these barriers to a greater extent than those in either group alone. Methodological limitations of the review process may have constrained the scope of our findings. For example, only the literature published in peer-reviewed journals was searched. Further, while we made efforts to perform a comprehensive search, all reviews are limited by the chosen search strategy. Therefore, applicable literature may be available that was not included in this review. Further, the current review only included studies of adults aged 18–64. Examining barriers experienced by children and elderly is an important area for future research. Our findings reflect a critical gap in the literature. This gap can be considered from 2 directions. Research on health care barriers related to race and ethnicity typically has not taken into account the fact that some members of underserved racial/ethnic groups also have disabilities that may further impact access to health care. Within the public health field, disability has historically been considered a negative health outcome rather than a population with ongoing health care needs.48 Thus, researchers focusing on ethnic-specific or racial-specific population groups may have limited familiarity with the concept of people with disabilities as another marginalized group. Conversely, the r


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Race & Ethnicity Language Acculturation Mistrust of medical establishment Physician-patient communication problems

Disability Inaccessible transportation

Race/age discordance

Other No insurance Insurance type No usual source of care Low income Low education Unacceptability of services Lack of clinician knowledge Poor service coordination Wait time Services denied or cut

FIGURE 2. Barriers encountered in literature on the intersection of race, ethnicity, and disability.

literature on disability-related barriers has largely ignored the racial/ethnic diversity within the disability population and the additional role that race and ethnicity play in obtaining appropriate health care. In this case, the lack of attention to overlapping group memberships may be due in part to the relative newness of the field of disability and health. The extant research is at a developmental phase where work is focused primarily on simply establishing the existence of disparities between people with disabilities and people without disabilities. However, our view is that those overall disparities vary considerably in relation to such factors as race, ethnicity, language, and socioeconomic status. Some studies of access barriers have examined disability and race/ethnicity separately or in parallel, but the interaction between the 2 factors are not explored in terms of barriers to care.49 Therefore, attention is needed to subgroup differences within the population of people with disabilities. Although it could not be determined from this review, we suspect that membership in multiple marginalized groups results in even greater barriers to health care access than are experienced by either group alone. Although disability status may increase access to health insurance for some, it can introduce other challenges related to factors such as physical access barriers and ableism (discrimination against disability). In short, the interaction of disability with race/ethnicity may result in a complex combination of health care barriers and facilitators, about which very little is currently known. New research on the intersection of race, ethnicity, r


and disability will need to take into account the issues involved in each component of this intersection, as well as the ways in which the components may interact. For example, how are experiences of racism compounded by ableism within the health care setting? What are the unique communication barriers for individuals for whom English is not their primary language who also are deaf or hard of hearing? What biases (conscious or unconscious) about disability are held by health care providers, and what is the impact when they intersect with biases about race/ethnicity for the same patient population? These and many other questions remain to be explored. As a whole, the health care literature has not adequately considered the impact of people who have multiple cultural identities (ie, race, ethnicity, disability). To understand these phenomena in greater depth, further studies are needed that have the specific purpose of examining race, ethnicity, language, culture, and disability barriers among people at the intersection. ACKNOWLEDGMENTS The authors would like to acknowledge many contributors to this study, including research staff support from Martha Bose, Colleen Kidney, Sabrina Kosok, and Amy Sharer; literature review support from Delores Judkins, MLS; and consultation by David Buckley, MD, MPH; Fabricio Balcazar, PhD; Pamala Trivedi, PhD; Royal Walker, Jr, JD; and members of the Project Intersect Advisory Council. www.lww-medicalcare.com |

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Contributions to the methodology were also made by members of the Expert Panel on Health and Health Care Disparities among Individuals with Disabilities: Elena M. Andresen, PhD, Oregon Health & Science University; Charles E. Drum, MPA, JD, PhD, University of New Hampshire; Glenn T. Fujiura, PhD, University of Illinois at Chicago; Lisa Iezzoni, MD, MSc, Massachusetts General Hospital and Harvard Medical School; and Gloria L. Krahn, PhD, MPH, Centers for Disease Control and Prevention.

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Ethnic Minority Status and Body Image Dissatisfaction: A Scoping Review of the Child and Adolescent Literature.

Scoping Review of the Zika Virus Literature.

Executive functioning: a scoping review of the occupational therapy literature.

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A scoping review of the proximal humerus fracture literature.

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Research on Balint groups: A literature review.

Inclusion of underserved racial and ethnic groups in cancer intervention research using new media: a systematic literature review.

Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature.

Understanding the Burden on Caregivers of People with Parkinson's: A Scoping Review of the Literature.

What is the patient experience in advanced liver disease? A scoping review of the literature.

Factors Affecting Length of Stay in Adult Outpatient Physical Rehabilitation: A Scoping Review of the Literature.

Coping with cancer-related cognitive dysfunction: a scoping review of the literature.

The Use of Decision Support Systems in Social Work: A Scoping Study Literature Review.

Factors that influence career progression among postdoctoral clinical academics: a scoping review of the literature.

Organisational systems' approaches to improving cultural competence in healthcare: a systematic scoping review of the literature.

Confronting inequities: A scoping review of the literature on pharmacist practice and health-related disparities.

Empirical relationships between health literacy and treatment decision making: a scoping review of the literature.

Corrigendum: Detecting Deception within Small Groups: A Literature Review.

Detecting Deception within Small Groups: A Literature Review.

What is the scope of improving immigrant and ethnic minority healthcare using community navigators: A systematic scoping review.

A scoping review of 10 years of published literature on community-based rehabilitation.

Applications and limitations of the concept of 'avoidable mortality' among immigrant groups in Europe: a scoping review.